Birth Stories

Birth stories are unlike any others.  They are a touchstone for many women, for many families.  I have seen it over and over, women bonding over their stories of pain and fear and finally joy.  I can't think of a greater leveler than birth.  Sometimes the story is happy, sometimes it is not.  Sometimes it just ends a bit differently than you expected.

I have a little baby with Down syndrome (and a twin that does not).   In the time since their birth, I have found that there are elements in our story that are very similar to so many others.  I have read quite a few since then and there have been some, that for one reason or another, have really resonated with me. Today, instead of me just telling you any old thing, I am going to do something a little different.  I am going to share stories of other parents and other babies with Down Syndrome.  Grab a cuppa and a snack and perhaps a handkerchief.  Today is about Birth Stories... with a little extra.

A Birth Story 

Nella Cordelia:  A Birth Story

Lucy: A Postnatal Diagnosis

The Unplanned Journey

Mat's World

Each of these links is a story of anguish and of love.  Initially there is sorrow, but out of that has grown great joy.  Just like us.  I hope you like these stories as much as I have.

Just in case you are new to this blog,  here is our story:

It Only Hurts When I Breathe (Wyatt's Diagnosis)

The Waiting Game (Visiting the Specialists)

The Best Laid Plans (Wyatt and Zoe's Birth Story)

Checking In (in the NICU)

One more little thing before I head for my bed: our story has been shared at Maternity.com.  I was interviewed last month and the story published on Thursday.  You can read it here. Thanks to Jennifer Allen for the opportunity.

Enjoy your Saturday;  I hope you enjoyed Story Time. 

Good night, little one.

Factoid Friday: Perceptions of Down Syndrome

Today I would like to present a series of recent studies about Down syndrome that focus on the overall impact that it has on the family and the well being of individual family members (including the person with DS themselves). The information in each of these studies was gathered with new or expecting parents of a child with Down syndrome in mind.

The first study asked families how they felt about their child with Down syndrome. 

• 99% stated they loved their son or daughter
• 97% stated they were proud of their son or daughter
• 95% stated that their other children (without DS) had a good relation with the siblings with DS
• 79% stated that they felt their lives were made more positive by their son or daughter
• 5% stated they felt embarassed by their child
• 4% regretted having their son or daughter

"The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride." - Having a son or daughter with Down syndrome: Perspectives from mothers and fathers., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

The second asked siblings of those with Down Sydrome how they viewed and felt about their brother or sister.

• 96% stated they were affectionate toward their brother or sister with DS
• 94% of older siblings were proud of their younger siblings with DS
• >90% planned to remain involved in the lives of their siblings with DS as they became adults
• 88% of older siblings felt that they were better people because of their younger sibling with DS
• <10% felt embarrassed by their brother or sister
• <5% wished to trade their younger sibling for another without DS

"The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing" - Having a brother or sister with Down syndrome: Perspectives from siblings., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

The third study asked people with Down syndrome (that were 12 or older) questions regarding their self-perception. 

• 99% expressed love for their families
• 99% stated they were happy with their lives
• 97% liked who they are
• 97% liked their siblings
• 96% liked how they look
• 86% felt they could make friends easily*
• A small percentage expressed sadness about their life.

(*Many of those who felt they could not make friends easily lived in rural areas where they were isolated)

"In our qualitative analysis, people with DS encouraged parents to love their babies with DS, mentioning that their own lives were good. They further encouraged healthcare professionals to value them, emphasizing that they share similar hopes and dreams as people without DS. Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives." - Self-perceptions from people with Down syndrome., Skotko BG, Levine SP, Goldstein R., © 2011 Wiley-Liss, Inc

  

 ...And that's the facts, Jack.  Happy Friday!

Learn to Speak "Therapist " in a Few Easy Steps

Down syndrome, like most things, flourishes with the right attention.  In terms of therapy, this includes a multidisciplinary approach.  As each of these Allied Health specialties has their roots in medicine, it may seem to the uninitiated that they have their own language.  For our second Therapy Thursday I thought I'd define some of the most common terms that one would run into.  It always helps to know the language of the place you are visiting.

First, there are the disciplines:

Occupational Therapy:  Promotes the learning and strengthening of specific skills that aid an individual with the activities of daily living.  

Recreational Therapy:   Promotes well-being and the reduction of stress and anxiety by providing recreational activities.  This also promotes socialization.

Physical Therapy (or Physiotherapy):   Promotes optimum physical movement and co-ordination with a focus on preventative care.

Speech Therapy:   Promotes clearer, more expressive and understandable speech

Some important terms relating to Down syndrome and their relevance:

Hypotonia:  Weak or low muscle tone. The muscles also have reduced endurance.
Impact:  Infants with hypotonia have difficulty learning to breast or bottle feed as they are unable to maintain a proper latch and tire easily.  Later there will be a delay in both gross and fine motor skills as well as significant delays in holding the head up (for example) and the ability to sit, crawl, stand, etc.  Hypotonia also has an impact on learning to eat and swallow solids as well as learning to speak. It is important that those with hypotonia learn to use the correct muscles for movement as compensation often occurs (by using other muscles instead), leading to chronic discomfort and the underdevelopment of key muscle groups.

Hypermobility or Hyperflexablility:  joints that bend farther than normal.
Impact:  Much like weak muscles, the ligaments are tend to be looser in those with Down syndrome which creates joints that flex farther than normal. Hypermobile joints tend to interfere with the normal physical development and can cause chronic pain later in life.

Macroglossia:  an "enlarged" tongue.
Impact:  An enlarged tongue interferes with all aspects of eating, swallowing and speech acquisition.  It can also interfere with sleep and with enlarged tonsils and hypotonia, contribute to sleep apnea.

Receptive Language:  The ability for an individual to comprehend the language that is spoken or signed to them
Impact:  This can cause difficulties in learning, social interactions and communication.

Expressive Language:  The ability for an individual to express their thoughts and feelings in a verbal, sign or written form.
Impact:  This can cause disturbances in learning patterns, limit social interactions, communication and is frequently a source of frustration for the individual.

Oral-Motor:  That pertaining to the functionality of the anatomy and muscles of the mouth, lips, tongue and face.
Impact:  Many aspects of life, including speech and eating.

Gross Motor Skills:  The ability to use the larger groups of muscles.  This starts with the development of posture and continues on to include sitting, standing and walking.
Impact:  Improper use of these muscle groups will affect movement and comfort for the individual for the duration of their life. 

Fine Motor Skills:  The ability to use the smaller groups of muscles, mainly those in the hand in tandem with eye movements.
Impact:  Any motion or skill that requires successfully grasping and/or picking up an object

Activities of Daily Living (ADL's):  Everyday self care activities such as feeding one's self, brushing teeth, getting dressed, etc.
Impact:  Directly dictates the level of independence an individual has.

Range of Motion:  The extent a limb or joint can comfortably move.  Active Range of Motion is the extent that the person can move themselves, while Passive Range of Motion is the extent of movement when it is manipulated by another person.
Impact:  This directly impacts levels of movement and comfort.

"Wy" Not?

Wyatt, 7+ mos.

In four short days, my twins are going to be 8 months old.

Eight months already... it seems impossible. But here we are.  Not that long ago, both babies were oh-so-very small and oh-so-very helpless in the NICU.  They, and we,  have come so very far.

Continuing from last week, Zoe has indeed learned to crawl.  She is most definitely on the move.  We have started calling her "puppy" as you will look down and she will be happily gnawing on your foot/the table/something she shouldn't have (and you have no idea where she got that something from).  We are in trouble.  Big time.  She also decided to learn to sit up on Saturday.  I looked over at one point and there she was, casually sitting there like she had been doing it all her life.

Wyatt is still working on rolling on his back and rolling over again.  He was assessed at group last week and all are quite happy with his improvement.  He is a little behind according to the developmental scales (more on that next week), but he is progressing steadily at his own rate.  They were pleased with the level of head control that he has mastered as well as the way in which we continue to work with him frequently though play.  His trunk strength and control is progressing similarly.  Through this we are also discovering his capacity to learn, which so far doesn't strike me as being too bad at all.  He doesn't seem to have the ability to remember things that he hears right away (it may take him a few times before he associates a sound with a particular action, which is typical of children with Down syndrome).  He will, however, learn if he sees something.  He watches our faces intently and continues to mimic the facial expressions and sounds that we make.  It is loveable and fascinating all at the same time.

One of our newest "things" is the back and forth communication between the two.  Of course, we have suspected it all along;  a nod here, a touch there, holding hands all the time.  Now they have started to communicate verbally.  It started with raspberries.  Wyatt loves making "thhhpppptttthhhh!" noises and we encourage it as he is actively using his tongue to do it.  The other day, Zoe started doing it back.  Now, if you catch them at the right time, you will hear "thhhpppptttthhhh!" going back and forth between them, with the occasional "ga-ah!" or giggle or Zoe's feet thumpa-thumpa-thumping in between.  I can't tell you how darling it is, I can't even begin to give it justice.  It is wonderfully adorable, totally snorgable moment.  You will need insulin.

Rolling, sitting, crawling, communicating.  That's a lot for a handful of days.  It makes me both curious and apprehensive of the coming weeks.  Soon there will be teeth.  Soon there will be standing.  Soon there will be many more ways for both of them to give us heart failure.  Our journey continues as each milestone is ticked off one by one.  We have learned in the last almost eight months to not ask "why?" but to ask "why not?"  There are so many instances where we would not know the joy that both of them have brought us.  Why two?  Why not?  Why now?  Why not?

Why DS?

Well, "Wy" not?

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